Wayne, Author at Catherine Cares

After our initial conversation with Maggie at Mercy, Lauren and I had some decisions to make. Would we bury our daughter or cremate her? I hadn’t given any of the options much thought, but Lauren was pretty firm that we would bury her. I was fine with that.

I called a funeral home in the St. Louis area so I could get an idea of what would happen and who we needed to talk to. The funeral home was very helpful and let me know we would need to select a burial site and a church.

I called a potential burial site location whose first question was if we would want our daughter buried with us. I said yes and then the follow-up question was to ask where our burial spots were.

Given we are in our mid to late 30’s, I had not thought much about our mortality much less made plans. The burial site person then discussed the various options for our burial locations, pricing, payment options, etc. He turned our discussion into a sales pitch using statements like “I’m sure the cost may seem high, but you need to remember we’re paying for operational costs such as lawn maintenance not just for your life, but for eternity.” I wasn’t pleased with his approach in handling the situation at all. I said thanks for your time and he told me he’d follow-up with me in a week or so to “close the deal”. I told him it wouldn’t be necessary and that I’d call him if I needed any additional information.

I found myself angry the rest of the day and week at the thought Lauren and I wouldn’t just be planning our daughter’s funeral, but we would also be planning a portion of our own as part of this.

As the phone calls to various places increased, I became numb to their approach and tactics hiding my anger, but secretly sulking through all of them. I also didn’t want to distract Lauren with a lot of these decisions. I made various phone calls and gathered the information so when the time came to make decisions I could just give her the answers based on the research I had done. As the mother, I know Lauren is going through a lot more physically so I felt it was the least I could do and an important task for me to carry out.

Over the next couple of weeks, I gathered the appropriate information and we finalized the primary logistics. It was a tremendous relief to have those decisions made.

Before we left the hospital, we met with another lady from a team within Mercy called Heart Prints. The Heart Prints team is engaged when it’s a terminal situation. While our meeting with this team may have been premature, we wanted to get some answers and direction.

After leaving the ultrasound area, we were directed to a private meeting room where we waited. Soon, a lady named Maggie came in and introduced herself. She sat in a glider chair and slightly glided back and forth as we talked. She reminded Lauren and me of a sweet grandmother. We instantly liked her.

Lauren was pretty emotional for this discussion so I did most of the talking. Our first topic was Madeline. We let Maggie know we had been telling Madeline that our baby is very sick. Maggie recommended we change that approach as Madeline is inevitably going to get sick. Maggie’s suggestion was to change the message to “We’re not going to be able to bring this baby home with us.” Her words were a strong reminder of what was ahead of us.

We then started talking about various labor scenarios. What would the process be if the baby was live-born? What happens if the baby is still-born? If the baby was live-born, there were many decisions which would need to be made. The number and timing of those decisions would be driven based on how long our little girl would live (hours, days, or weeks).

Maggie kept reminding us we didn’t have to have this discussion now and we could wait. But, we wanted to try to prepare ourselves as best we could so we continued talking.

Maggie asked if we had a name for our baby. We didn’t. While we had talked about names nothing really stood out to us yet. We wanted a name with meaning. Maggie offered a book she had to assist us with the name. We took her up on her offer.

Maggie also asked if we had thought about taking pictures of our little girl. This was something I had not put much thought into but my first thought was if she was still-born we would not take pictures. It just seemed weird. Maggie said she strongly recommended taking pictures regardless because the pictures would be the only visual memory we will have. I wrestled with that idea. It is a memory we will carry forever so why would we need pictures? What would we do with them?

The topic then changed to what would happen after she passes and funeral logistics. It reminded me of the process of when my mom passed many years before so sadly that was familiar.

Maggie asked if we had any more questions. We didn’t so Maggie hugged us and said she would be praying for us. We left and went home. It was another mentally and emotionally exhausting day.

The Rams had a 15 year Super Bowl XXXIV reunion this evening. Since dad’s birthday was a few days before, I got tickets to the event as a birthday gift. The reunion also brought back a flood of memories for me some of which are due to my unique history and connection with the organization which began 15 years ago.

My neighbors growing up, and whom I have been good friends with throughout my life, were St. Louis Rams cheerleaders in 1999. During that season, my mom passed away at the age of 54 when I was still in college. To help my dad and me with the grieving process, our neighbors gave us access to Super Bowl XXXIV tickets. Their act of generosity was immeasurable. The game and experience is something my dad and I will always remember, but it also created many memories which will resonate with my dad and me forever. When I graduated in May of 2000, I bought season tickets and we have been season ticket holders ever since.

When we bought season tickets, tailgates became a staple for my dad and me. In the early 2000’s, tailgates consisted of friends whom were already, or became, season ticket holders. Year by year we improved our tailgating skills with the highlight being when we decided to begin cooking the signature food of the St. Louis Rams opponent as a part of each tailgate. Later, our tailgate and St. Louis Rams traditions grew and changed when my girlfriend began attending tailgates. After Lauren and I got married, she continued to come to tailgates and later, after our daughter Madeline joined our family, we brought her to several tailgates.

My neighbor’s simple act of kindness in 1999 led to it all. Initially through healing for my dad and me, then as fans, then as a reason for everyone to gather and have fun.

Near the beginning of the reunion, Coach Vermeil spoke and I suddenly found myself experiencing a wave of internal emotions. While the 1999 team has brought many fond memories, they’re also linked to a time of sadness in my life from my moms passing. As many coaches and players of the 1999 team were onstage sharing stories, I felt a new connection to the 1999 team through the sadness we were going through with our sweet baby girl’s Trisomy 18 diagnosis.

When dad and I left the event, we found ourselves reliving certain things from our past and reflecting on the current situation. I shared with dad my realization of the parallels and he became very quiet. It was a shocking revelation for him I’mm sure.

Many people who know me say I’m a huge St. Louis Rams fan. I certainly enjoy the St. Louis Rams, enjoy watching the games, enjoy tailgating, and enjoy football. However, I look at the St. Louis Rams differently. The organization has a deep connection in my life. They’ve played a role in healing, happiness, excitement, and togetherness. As such, their impact in my life goes well beyond the field and game. If that makes me a huge fan, so be it. I just appreciate the connection.

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Since learning of the Trisomy diagnosis, many friends within St. Louis and outside of St. Louis reached out offering to help. “Anything you need,” was a common statement and was very appreciated. Two of my best friends were very persistent. “We need to go out,” theyâd say. Iâd say I was too busy which really meant I wanted to stay with Lauren, but I suspect to them it meant I was trying to isolate myself.

Friday afternoon I got a text from one of them. Busy after work? I called Lauren and asked if we had anything to do. She said no so we met out.

As I said, this is one of my best friends. We have the same view on many things. We met in college, are about the same age, had the same major, worked together for a while, both lost a parent too young, were in one another’s weddings, etc. The phrase “brother from a different mother” applies.

We started talking about all the usual stuff. Work, the Cardinals postseason, the Rams were off to another frustrating start, our kids, etc. Then the conversation switched to what Iâd been going through. He asked how I was handling it. The reality was I was still trying to accept everything, but I also knew there were multiple decisions which weâd need to make in the near future. Things like:

Do we name her? Whatâs the point in taking the time and energy to name her?
If sheâs stillborn, do we take pictures of her or with her? It seems really strange to take pictures of a baby thatâs deceased. But if we donât take pictures of her, thereâs no real memory of her. Is that a bad thing? Do I want to remember this time in my life?
If Laurenâs health becomes at-risk as a part of this, then what? The word âterminateâ wasnât an option for us due to our beliefs, but could Lauren face challenges due to this? Is there any risk I could lose her as part of this?
What does a funeral look like? If Lauren goes full-term, do we bury the baby? Cremate her?
What do we tell Madeline?

We talked about and analyzed the above questions for hours. Sometimes weâd talk about the loss of our mom/dad to see if the answers to any of the above questions were in our past experiences. Eventually after weâd talked through everything it was time to go.

I told him I appreciated the talk and him and everything he did. We hugged and went our separate ways. Although many of the topics we discussed were depressing topics, it was nice to talk about them.

Steve Jobs once said, âYou canât connect the dots looking forward; you can only connect them looking backwards.â If there was ever a time in which I desperately wanted to prove that quote wrong, it was now. However, the quote is spot on. Despite my desire to look forward, it wasnât realistic. Over the coming days, weeks, and months, Lauren and I would need to put together a plan so we could one day look backwards and connect the dots.

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Two days off was long enough. I had multiple projects in critical phases which all had high executive visibility. I needed to get back to work. I’m an IT consultant and have a very analytical approach to things. As such, my mind had been analyzing the ultrasound and what we heard for two days with minimal sleep.

Numerous questions were flying around in my head, but they all had the same theme to them which was essentially: “How confident are you in your initial assessment?” After all, people make mistakes. We’re all human. Who’s to say what they saw wasn’t really there? Or maybe the ultrasound machine sometimes displays things which aren’t really there” Ultimately, my objective was to get something which had been lacking. Hope.

On my way to work, I called our assigned caseworker, Karen. I must have asked her a variation of the same question ten times. I would always quantify the question with something along the lines of “I know there’s probably a small chance”, but I’m sure Karen saw right through it all. Despite my best attempt to establish hope, I wasn’t given any. The doctors were very sure of their findings and wouldn’t have delivered the news in the manner they did if they thought there was a chance of a different outcome.

My mind then changed to: What do we hope for? What do we pray for? Suffice it to say, I was a walking zombie at work that day as my mind processed Karen’s words. Every call I facilitated I’m sure I facilitated poorly as the reality continued to sink in.

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